Now, he’s made a rare public appearance to speak about his experiences. Standing up before the Marfan Foundation, Carlile tearfully unfolded his story.

“I used to sing in a rock & roll group called Of Mice & Men, like the book. I have Marfan Syndrome. About eight months ago I had to quit rock music because of Marfan Syndrome,” he said.

“I got home from a tour one time. I couldn’t perform anymore,” he continued. “I had three dural tears in my spine. My spinal fluid was leaking. I went to two or three different doctors and was turned away. I had a doctor call me a liar.”